Help us to understand when and how ALS begins

Recruiting unaffected family members of genetic/familial ALS

Study Name
Pre-fALS (Pre-symptomatic Familial ALS)
Michael Benatar, MD, PhD and Joanne Wuu, ScM
Study Type
Observational, Longitudinal, Prospective, Biomarker
Eligible Population
  • Unaffected individuals with a family history of ALS and who may be at genetic risk for developing ALS
  • Anywhere in the United States or Canada
Study Purpose/Goals

(a) Characterize the pre-symptomatic phase of disease

(b) Develop biomarkers that may be used to detect pre-symptomatic disease or even permit the prediction of if/when a gene mutation carrier will develop ALS (or FTD)

(c) Prepare for a disease prevention trial.

  • Genetic testing (with choice whether or not to learn the results)
  • Genetic counseling
  • 3-day study visits in Miami every 12-24 months
    • Family and medical history review
    • Collect blood, urine, and CSF fluid (CSF optional)
    • Brain MRI
    • Neurological exam
    • Full neuropsychological exam
    • Breathing testing
    • Fine motor skills testing
    • Epidemiological review
    • Surveys
  • 15 minute phone call check-ups every 3-4 months alternating with at home remote visits consisting of questionnaire and blood and urine collection

Join our family - together, we can change the course of this disease.

Join our family

Together, we can change the course of this disease.

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